My son’s story

18.1.85 – 12.3.15

“Someone I love has gone away,

And life is not the same.

The greatest gift that you can give

Is just to speak their name.

I need to hear the stories

And the tales of days gone past.

I need for you to understand

These memories must last.

We cannot make more memories

Since they’re no longer here.

So when you speak of them to me

It’s music to my ear.”

Our elder son was born on the 18th January 1985 in Exeter. He was five weeks premature, and was diagnosed with Pierre Robin Syndrome. He found life difficult right from the start. Later on he was labelled with Asperger Syndrome too.

Despite these drawbacks, he was an amazing young person, with a kind personality, a complex character, a huge knowledge of trivia, an astounding vocabulary and a wicked sense of humour.

He loved to travel the world with us and his younger brother. Whether it was sailing around Tobago, Bermuda or the Virgin Islands. Swimming with dolphins in the Florida Keys. Holidaying in Corfu, Switzerland, Hong Kong or Singapore. Snorkelling on the Barrier Reef or walking the sands of Magnetic Island or Bondi Beach. Rainforests and the snowy Australian Alps. And of course he loved America. From Chicago to Key West, Charleston to Daytona. Hilton Head and North Myrtle Beach were places he’d come to know very well. But it was in Orlando that he really had fun. The theme parks excited him so much, with their amazing variety of white knuckle rides. He loved Universal Studios, The Islands of Adventure, Sea World, Aquatica, The Magic Kingdom and DisneyWorld, Busch Gardens, Typhoon Lagoon; the list goes on and on.

As a family we were all in Florida for the turning of the millennium. We drove to Cocoa Beach, were sitting on the sand at 5am on New Year’s Day as the sun rose on the first day of the year 2000. An awe-inspiring experience.

His schooling was sometimes difficult, as he needed much extra help, but he made so many friends along the way. He really was such an individual character. He spent two years at school in Australia, then when we returned home he went to the local Junior School. At sixteen he went on to complete a three year course: Further Education Through Horsemanship, and stayed in the New Forest at a wonderful facility called the Fortune Centre. For the next ten years he spent time at Palace Farm in Devon, coming home throughout the year for weekends and longer holidays. There he continued with his horse riding, helped out in charity shops and had an assisted placement at a children’s nursery. He loved looking after the younger ones.

He was an avid reader and was rarely without one of his books. From He-Man and She-Ra, Thomas the Tank Engine, Star Trek or any Enid Blyton, to Greek legends and Indian mythology, the history of the native American people, to Homer’s Iliad, or the Three Musketeers by Alexandre Dumas. He loved the written word.

In his late teens he was taken to Lourdes, in France by the HCPT, to visit the shrine of Saint Bernadette. He went with a group of children with special needs, organised by the Royal Navy. To all accounts he had a wonderful time, even drinking his souvenir bottles of holy water in the hope of making him better, more normal.

St. Ives was his home, and he felt safe here. He would wander around visiting the bookstores and charity shops. Walking across the beaches and through the streets.

It was in September 2014, soon after we’d returned from our summer holiday in America, that he first went to hospital, complaining of a pain in his testicle. In October, following a biopsy, all was reported as being ok. But cancerous cells had been found, so a week later he had his testicle removed. And so we thought that was it. But during November he continued to have headaches and vomiting, and at the end of the month, he was found to have a brain tumour and further tumours in his lungs.

We were so scared and shocked. His 100 days of chemotherapy began on December 3rd. Sometimes there would be day case infusions, sometimes he would have to remain in hospital for six days at a time. Both my husband and I took it in turns to stay with him. He lost weight, and also his hair. He bore his treatment bravely, and half way through we were told the tumour in his brain had shrunk markedly. He was in hospital for Christmas morning and also for his 30th birthday. By the end of February he developed peripheral neuropathy, and found it hard to walk. He began to lose his appetite, and on two occasions had blood transfusions to boost him up.

Our son was not like other thirty year old men. He depended on us totally. He did not go off to college or university. He didn’t have a girlfriend, lover or wife. In the last few months he was our shadow. Everywhere we went, he came along too. Our constant companion. There was a comforting routine to his life. We looked after him, and he was protected in his own little world.

296 responses »

  2. I’m so sorry to read this. It’s heartbreaking, and you’ve written it so well, that I almost felt every feeling with you. I’m so sorry. You are so brave.

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  3. I cannot imagine how it would feel to actually lose one of my sons. I have almost done so, but was spared that final grief. I do understand the nature of being a family who gives care and well as love. My heartfelt respect to you and your family.

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  4. Thank you for the follow and stopping by my blog! I am very sorry for your son, I have a daughter and I can’t imagine how painful is what you are going through. Remember he is and would be always with you no matter what..love and prayers are sent to your way šŸ™‚

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  6. I am so sorry for the loss of your son. One of my brothers had testicular cancer. He survived it, many years passed, but now a different type is consuming and raging. Such a terrible disease! I pray you are finding peace some days but it is a journey. You are in my prayers.

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  7. My heart hurts reading this. So, so sorry for the loss of your son. I cannot ever begin to think of what it must be like to bury a child and I’m sad to think that anyone has to go through this kind of pain. Thinking of you and sending love and healing your wAy

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  8. Hi,

    Deep Respect for the Grace with which you have accepted all that came your way. Even more regard for honoring a life with its own set of challenges, and universe demanded a duty out of you as a parent, which you have lived up to with all heart and soul.

    I am hoping you will find peace in the thought that ‘You did All that you could, all that is humanely possible’. 30 years is a long long time.

    I hope the deep realization sets in and you feel the power of it…..,’Hold no Regrets’ cause trust me when I say, very few get the chance to go the distance in Love and with so much Grace.

    You Did the Best You Could. Please know that and feel it. If nothing else works…try telling yourself…there wasn’t anything else that you could do….you did all that you possibly can. [That’s what it seems to me having read your story]

    May you find Peace.

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  9. I am reading your story and your son’s with my mouth open. You son was my oldest daughter’s age and I can’t even imagine the pain of losing a child. My heart goes out to you and for the journey you are experiencing with melanoma. You are indeed brave and inspirational.

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  10. May God give you the Peace that can only come from Him! I have one son, twenty six, my heart aches as I have read from start to finish! Though I don’t know your names I will be praying for you and your husband. I know that God will know who “the angel’s parents are”. God Bless

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  12. I’m so sorry about the loss of your precious son. And I read about your own ongoing experience with cancer, and I hope that you will have full remission and many years ahead of health and joy.

    I’m grateful you found my blog and led me to yours. Always good to meet another in this tribe that no one would ever choose to join, and I’m sorry for the reason we have met.
    many blessings.

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  14. I can’t imagine how it would feel to lose a child. We have an only daughter about the age of your son, and I don’t know what I would do without her. I am so sorry for the loss of your son. I lost my dad and sister-in law to cancer and I know how hard cancer is itself. May the good LORD give you peace and comfort you. Hold on to the memories…No one can take those away from you. Blessings to you.

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  18. If we are talking about love…that was his purpose…to love, to experience and to be loved. “Labeled” with aspergers was just that a label! I know it is agonizing that he is physically gone…but I’ve read enough of your blogs to know that he is still here with you in love!!

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  20. Your son had a very well lived life, a life full of love, care, support and adventure. He was blessed to have you and both of you to have him. I lost a baby, maybe you had read that on my comment on Sarah/Debbie Sue’s post. I never seen him or hold him, just a glimpse after my delivery, no picture, no nothing. At first when I have known, he was gone, even if it is confirmed in the ultrasound that he has no heartbeat, I don’t want to believe it, I am still hoping that the machine is just wrong or have technical problem. I had blamed myself (maybe I will be able to detail this experience in a post but I find it hard for now). I am blessed to have a new baby boy now and I hope that I can be a great parent as you are to your son. Losing a child will always be the worst experience and now that I have a new child, the worry is always there but I am enjoying every moment I have with him. My prayer is to you and your husband and may your health improve. Lots of hugs…

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  23. I’m so sorry for your devastating loss. This is a heartbreaking story to read. It’s sweet that your son liked to help the younger kids and that he had a kind personality. That’s all that really matters. Sharing his story is a beautiful way to keep his memory alive. He was blessed to have you and your family so dedicated to caring for and loving him and I know he is a blessing to you. My heart goes out to you. ā¤

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  28. It is never easy to lose someone. My mother having lost 5 of my siblings told me it was unbearable. I know that the mother daughter or son relationship is the bonding that has broken like a umbilical that has snapped with what feels like forever chord. The deeper the grief the more the bond was there. You have my sincerest condolences on the lost of your son. Be well.

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  35. Yours is a poignant and painful story. What a wealth of experiences you had with your beloved son. I can imagine that both comforts and tears you apart. The loss is enormous!
    I wish you peace and healing. Thank you for sharing so candidly.

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  36. I have no words that haven’t already been said. But maybe it gives you some comfort to see how your poems and stories about your son have touched so many people. He will never be forgotten.
    Thank you for sharing your feelings with us all. It lifts my heart to read the stories of others, and helps me to feel less alone.

    I love your blog design, by the way… it’s beautiful! x

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  37. Thank you for finding strength to share your heartbreaking story. As you can see, you have reached many, many people and have touched them. I wish so much that we could find the words to bring you healing. But of course, we cannot. God bless you. Stay strong in your faith and hold tight to all those wonderful memories.

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  39. When I saw you had decided to ‘follow’ my blog I immediately looked up your blog….and instinctively felt a need to read as much as I could…..I sensed something that drew me….Now, I’m not sorry I’ve spent the last hour exploring your story…..May I send you my Prayerful Thoughts, Love and Hugs! I’m with you……..

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  44. There is not much I can say except thank you for sharing the gift of words and love about your amazing son. Peace and blessings and thanks for taking the world on your journey of healing and memories of a life, peace and blessings, K

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  46. My heart goes out to you in your deep sorrow! No loss is as great as that of one’s child! Here is a poem I just wrote for you.

    You have lost a precious son so dear.
    Please know that he is now free of suffering and pain.
    For he happily basks in God’s glory, have no fear.
    As he flies at His right hand on Heaven’s plane.

    My deepest sympathy to you and your family!
    Blessings & love!

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  50. Your poem is such a lovely tribute to your son. As a mother of 3 grown sons my heart was breaking as I was reading your son’s story. I can’t imagine what you went through with his illness and loss. My condolences to you and your family. Thank you for sharing your son’s story.

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